In 1973, Dr. R.C. Backus, Executive Secretary of the Tuskegee Syphilis Ad Hoc Advisory Panel, donated to the National Library of Medicine (NLM) photocopies of original correspondence, memoranda, meeting minutes, reports, and scientific articles on the origin, development, and investigation of the U.S. Public Health Service Syphilis Study at Tuskegee. NLM’s stewardship of this collection supports the Library’s mission to enable biomedical research, support health care and public health, and promote healthy behavior. Today, Circulating Now welcomes our Health and Human Services (HHS) colleagues Susan K. Laird and Termika N. Smith from the Centers for Disease Control and Prevention (CDC) to relate their experience with hosting a special event commemorating the 50th anniversary of the closing of the study.
The year 2022 marked 50 years since the ending of the U.S. Public Health Service Syphilis Study at Tuskegee Syphilis Study at Tuskegee and Macon County, AL. The Centers for Disease Control and Prevention (CDC) played an active role in both the continuation and subsequent ending of the study. This important, yet somber, event presented an opportunity for CDC to provide an educational experience that would not only present what happened, but why it happened, lessons learned, the implementation of regulatory and other policies that would ensure human subjects protection and prevent this type of unethical research from ever occurring again, and CDC’s on-going role in addressing health equity. Notably, with so many years passing since the end of the Study, those who could provide a first-person perspective have only a limited number of opportunities to continue to share their story. Additionally, new, and even seasoned public health professionals may not be as familiar with the legacy of the study. Importantly, Syphilis Study survivors had but two requests when the Study ended: (1) to never be forgotten and (2) that this would never be allowed to happen again. This event sought to continue CDC’s role in honoring both those requests.
In 2022, a small workgroup* came together with one mission—to commemorate the 50th anniversary of the ending of the Study. It began with a conversation between colleagues who reached out to gain support from the CDC leadership. After gaining buy-in, the workgroup identified potential speakers by reviewing the history of the study and its impact. To present the best event the workgroup agreed to create panels that would be divided into “acts.” The discussants included descendants of the men from the study, historians, authors, ethicists, and former and current CDC staff.
The workgroup engaged the White House, the U.S. Department of Health and Human Services, and the Office of the Surgeon General. These efforts resulted in a surprise video introduction from President Joseph Biden, live virtual remarks from U.S. Secretary of Health and Human Services Xavier Becerra, recorded remarks from the 21st Surgeon General of the United States Dr. Vivek Murthy, and an in-person welcome from CDC Director, Dr. Rochelle Walensky.
Each panel was moderated by a member of the workgroup. The first act addressed the history of the Study, and featured Lillie Tyson Head, president of the Voices for Our Fathers Legacy Foundation. The focus of the second act (Never Forget) was about events leading up to the ending of the study and featured former President William (Bill) Clinton’s formal apology (May 1997). The third act (Never Again) highlighted the Survivor’s requests to: (1) not be forgotten and (2) for this to never happen again. The second and third acts enlightened the audience on how measures were put in place to ensure that both requests were honored. Dr. Vivek Murthy also shared Dr. Satcher’s advice on how building a healthy present and resilient future could only be achieved after the hard work of remembering and reflecting. Act Four acknowledged the contributions of former CDC staff who tried to stop the study and included tributes to Bill Jenkins and Peter Buxtun.
With a focus on the study’s historical significance and a goal of educating internal and external audiences, the event, “Recognition, Remembrance, and Reflection: The Syphilis Study at Tuskegee and Macon County, Alabama,” was held on November 30, 2022, with 4,183 people watching via live webcast and over 300 people in-person at CDC’s Roybal campus.
Importantly, the audience included 70 participants from the Public Health Apprentice Program, the youngest of public health professionals and the generation that will be leading decision-making into the future. These fellows were able to experience history through the voices and recollections of the panelists, and this will likely have a profound impact on their public health careers moving forward.
Universities, schools, and programs of public health used this event as training for faculty and staff and classroom opportunities for students, incorporating the event into their own learning management systems to facilitate tracking participants. Mississippi State University and Duke University were two of the universities that gave classroom credit for viewing the event. The workgroup invited deans and faculty from public health programs at Emory University, Emory’s health equity leadership, Georgia State University, Morehouse College, and Mercer University, who all attended in person along with students from their programs, further impacting current and future public health professionals.
In addition to the recording of the event, there is a “Personal Reflections” video featuring family members of the men in the study, ethicists, current and former CDC staff and leadership who share their personal thoughts on what the study means to them, its overall impact on public health, and how we use lessons learned from the study to ensure CDC’s work to achieve health equity is ethical, just, and community engaged.
The event also reinvigorated the community’s demands to cease referring to the study as “The Tuskegee Study,” but rather as the “U.S. Public Health Service Syphilis Study at Tuskegee”—acknowledging the true investigators and backers of the study and removing the stigma imposed upon Tuskegee and Macon County, Alabama for so many years.
Comprised of people from various CIOs, programs, and areas of expertise, the group focused on acknowledging the wrongdoing, honoring those impacted, and moving towards healing through five core principles:
- Authentic accurate storytelling;
- Illuminating that racism, class, and complacency each played a significant role in the Study;
- Sharing the tenets of the Public Health Framework;
- Providing an inside look into what we have learned; and
- Remembering the Syphilis Study so it never happens again.
This 50th anniversary commemoration elaborated details of the dark history of this experiment that allowed 40+ years of the denial of healthcare to unsuspecting African American men in Macon County, Alabama. The tragedy of the Syphilis Study continues to undermine trust in governmental institutions. Bringing this history to the public in 2022 reinforced that we must value all people equally and remain diligent in our efforts to protect and promote the health and wellbeing of all communities equitably.
The NLM finding aid for the collection includes copies of articles, reports and correspondence compiled for the ad hoc advisory panel commissioned to investigate the Public Health Service’s syphilis study in Tuskegee in 1973. To access the collection, visit the NLM Reading Room. Learn more about the NLM Archives and Modern Manuscripts Collection.
*Workgroup members in alphabetical order:
Karen Bouye, PhD, MPH, MS, health scientist, Office of Minority Health & Health Equity
Catina Conner, MPH, senior policy analyst, Office of Science, Office of Scientific Integrity
Paula Eriksen, health communication specialist (CTR) Division of Communication Science and Services
Anne-Reneé Heningburg, MPA, lead public health advisor, Global Immunization Division
Susan K. Laird, DNP, MSN, RN, training and health education lead, Division of Communication Science and Services
Mary Leinhos, PhD, MS, (ad hoc) acting team lead, Public Health Ethics and Strategy Unit Office of Science, Office of Scientific Integrity
Leonard W. Ortmann, PhD senior ethics consultant, Office of Science, Office of Scientific Integrity
Christopher S. Parker, PhD, chief, Management and Operations Branch Center for Global Health, Division of Global HIV and TB
Ted Pestorius, MPA deputy director, Management and Overseas Operations Center for Global Health
Hilary Joy Polk, MPH, (ad hoc) DEIAB communications lead Office of the Director, Office of the Associate Director for Communication
Tony Richardson, MS, MPH, MSCJ public health analyst (issues management) Office of Science
Termika N. Smith, EdD, MPA, associate director for Policy, Communications, and Strategy Division of Adolescent and School Health National Center for HIV, Viral Hepatitis, STD, and TB Prevention
Jo A. Valentine, MSW associate director, Office of Health Equity, Division of STD Prevention, National Center for HIV, Viral Hepatitis, STD, and TB Prevention (NCHHSTP)
Paul R. Young, MD, commander, U.S. Public Health Service, regional associate director, The Americas and Kenya Division of Global HIV & TB, Center for Global Health